Saturday, February 14, 2009

This weeks update with the Princess

Lindsay's new princess bow from Danielle H. in Kansas! We are saving the other she sent for a very special day. :-) Hopefully all of you will see it someday soon!
Cole, handsome as ever, Friday night waiting to give the new King his crown.

Lindsay's 1st Valentine's Day! We think red is definately her color!


Hello everyone! Happy Heart Day!!! Well, since all of the news of the auction has been up for a while from the committee, I thought I would finally post news about the Lindsay. She has had a great week! Besides being told again that the Hemi is not an option for her, she is making great strides with her K (they increased her oral amount given with her feeds which lowers her amount given by IV during certain parts of the day) and as of 2 days ago, she has started another antibody reducing drug, CellCept. This is taken orally twice per day so let's pray that this one is more effective. They are, of course, not promising anything, but this could be the magic drug or it could not. Rituxin is on the menu for the week after next. She has been keeping most of her feeds down minus a few throw ups every now and then. I am really surprised that she isn't throwing up more often because of all of the drugs that she is on that are supposed to irritate the stomach. Yesterday the docs had their weekly transplant meeting and I haven't yet heard about the next plan of attack for Miss Lindsay or if anything right now. You all know she has to take baby steps! I left yesterday in the early part of the afternoon and didn't get a chance to catch up with any of them. I will probably get the lowdown on Monday. I have a cute Valentine photo of Lindsay but I am on the wrong computer to post it. I will share a little later today. Well, we are looking forward to seeing everyone this evening at the dinner. We have been so overwhelmed by the generosity of others that I am an emotional wreck. So, tonight, if you see me crying, that really doesn't mean that anything is wrong, it's just the I am overwhelmed and my hormones are just taking me over!!!!!! Last night was also an emotional one too. The student council at the local high school, Parchment, ran an all week fundraiser coin war and t-shirt sale to raise money for the Lindsay Dean Heart Fund. There efforts were simply amazing and the wonderful thing about it was that it was children doing this. We just lost it when we heard the amount that was raised! It was also homecoming for the high school and the student council had asked if Cole would like to participate in the crowning of the King and Queen ceremony. Of course the answer was yes and we all watched Cole carry the Kings crown last night dressed up in a tuxedo and everything! He did a fantastic job and we were so proud of him for doing this! We are blessed in so many ways and we can't help but get emotional on how Lindsay has touched the lives of others. It will be a long hard road ahead of us either way and we just simply ask that you all keep praying for our sweet heart baby girl. God bless you all and see some of you this evening!
Heart blessings~
Suzie

5 comments:

The Hands said...

I'm so glad that you posted. I've been wondering about you for a long while now and was about ready to call. I assumed that no news was OK news. Sorry to hear about the "hemi" not being an option again, but it is encouraging that Lindsay is doing well despite. We just hope that she continues to grow and get bigger and mature so her "heart options" increase. This road that you must travel is a rough one, but it sounds like God's provided a souped up ATV to get over the rough terrain through the gifts of so many people (His Grace). Happy Heart Day!
Angie

Anonymous said...

Suzie, Jr & Family,

It was nice to see you guys last night, what a beautiful evening. Our thoughts and prayers are with you and your family.

Love, Kerri, Brian & Olivia Martin

Stephanie Winter said...

God is so good!! What an amazing night! We are praying for your strength and it looks like God hears our prayers... and from the turn out last night that you have more people praying than you ever imagined. We love you guys!

Anonymous said...

Suzie And JR--
Glad your weekend went well and Lindsay behaved. I can't wait to hear all the details on the fundraiser. Cole looks so handsome!!! You must be so proud. Take care!

Lisa pod A

Lori McDermott said...

Hi Suzie and Lindsay,Im Sofis gramma.I was so happy to meet both of you.Lindsay has the BIGGEST eyes that I have ever seen!.She is such a doll!I hoe her outfit fits her nicely and I wish you and little miss big beautiful eyes a great day,God Bless xoxoxo..Lori